Are their support groups for Myelofibrosis?

Me too - we could start one? Diagnosed June 2025 - such a shock. I have an SRSF mutation- means I could move to AML.

Hi @toste, and welcome to Mayo Clinic Connect! This is a new one on me. I am so glad you posted this discussion so you can connect for support, and that others coming to Connect with the same question find you.

I went to the home page and typed ‘myelofibrosis’ into the search box. I found links to a number of related discussions you may be interested to review if you haven’t already. They are all in the Blood Cancers and Disorders Support Group.
- Join/Follow Blood Cancer and Disorders Support Group: https://connect.mayoclinic.org/group/blood-cancers-disorders/
- Myelofibrosis discussions: https://connect.mayoclinic.org/search/discussions/?search=Myelofibrosis

Also, the Mayo Clinic Hematology Blog has a couple of related posts:
- Myelofibrosis research: https://connect.mayoclinic.org/blog/hematology/newsfeed-post/international-research-team-identifies-genetic-based-model-for-predicting-outcomes-in-prim-1/
- Myeldoysplastic Syndromes treatments: https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/

@davi0937, A support group sounds like such a great idea. You may want to check out current discussions (above) then see what you think. Also, I noticed the research blog (above) is not super recent, but references SRSF, your genetic culprit. You can click “hematology” in the upper left corner, then find ‘contact us’ on the blog home page. From there you can contact Hematology Staff and ask your questions. Let them know you were referred to them by Mayo Clinic Connect.

What led you both to diagnosis, and what challenges does Myelofibrosis create for you? @toste, were you recently diagnosed? Do you have other health issues or complications?

Thank you- I will check out this information! @toste - let’s stay in touch!